In yesterday’s blog post, I discussed some of the barriers I face to living an independent life with Cerebral Palsy. I rely on PCAs to help me live independently. My PCAs assist me with activities of daily living, including toileting, dressing, and grooming. PCAs also help prepare my meals, and do my laundry. I have been receiving PCA services since I was about eight years old. At that time, PCAs came into my home to help my parents with some of my needs.
As I’ve grown older, my need for personal care assistants has only increased. In 2018, I graduated from high school and was looking forward to attending college. I relied on my PCAs to drive me to campus and assist me with my needs while I was there. I went through three PCAs in three semesters of college. It was very frustrating. PCAs are vital to my ability to live independently in my community. Without them, I wouldn’t be able to shower or use the bathroom.
Medicaid currently pays for 56.5 PCA hours a week. Even though I require 24-hour care, Medicaid will not cover it in a community setting. If I lived in a nursing home, Medicaid would, ironically, cover 24/7 care. It would cost much more for me to live in a nursing home. Living at home saves the state of Massachusetts thousands of dollars a year. Nursing home care costs an average of $7,756 per month for a semi-private room. The average monthly cost for a private room is $8,821. This adds up to $93,072 and $105,852 a year, respectively.
Going into a nursing home would be devastating to me. I wouldn’t be able to see a movie on the weekend or go out for dinner on a Friday night. I would miss going Christmas shopping and seeing my friends and family. No non-disabled young adult wants to live in a nursing home. Why should someone with Cerebral Palsy be any different? When I wanted to move out of my parent’s house, I didn’t want to go into a nursing home.
People with disabilities want to be a part of their communities. They prefer to participate in community activities. I, along with many other disability rights activists envision a world where everyone with disabilities receives home care rather than being institutionalized. It might seem impossible but with enough support it could happen.
Parker, Tim. “The Median Cost of a Nursing Home.” The Balance, The Balance, 25 Oct. 2021, https://www.thebalance.com/average-cost-of-a-nursing-home-4177589.